Afghan leprosy sufferers victims of ignorance more than of illness

When Zahra hobbled back to the hospice, she was carrying a handwritten letter from her son-in-law which she didn’t know how to read. It fell to her doctor to decipher the scrawl – and it broke the old lady’s heart.

“He asked her not to visit again,” said Dr Ali Mural. “He said people in the village were scared of her, and if she came again no-one would talk to them.

“He said Zahra is our responsibility until she dies, so she will never see her family again.”

Zahra, in her 60s, bears the physical deformities of chronic leprosy. Haunted eyes peer out of misshapen hollows in her face and her eyelids never close. Her hands are stretched like claws; part of her nose is missing.

Yet far worse than the symptoms of her disease, Dr Mural said, is the stigma of it.

“There is a strong belief that leprosy is a punishment from God,” said Liisamaria Keates, a spokeswoman for the World Health Organisation in Afghanistan. “People just don’t believe that it comes from bacteria and it is treatable.”

Left untreated, leprosy is highly contagious – because it is often passed from parent to child, many rural communities believe a whole family is being punished for a particularly heinous crime against Islam, Ms Keates added.

There were at least 389 new cases in Afghanistan since 2001 – 37 reported this year – but officials fear the real figure is much higher, because many cases go unreported due the shame attached to diagnosis and a shortage of trained healthcare workers. Yet with the right drugs and doctors, the WHO says diagnosis and treatment is “easy”.

Zahra and Fatima – the only other patient at this hospice in Bamyan province – are victims of ignorance more than illness.

Both of them have been cured, neither are contagious – but because no doctor can undo the deformations caused before the treatment started, they must bear their pariah scars forever.

“People are scared of us. No-one visits us. Even in the hospitals, when we go there, the doctors are scared of us,” said Fatima.

There are 12 leprosy clinics across Afghanistan and the WHO is working with the ministry of public health to try and raise awareness and reduce the stigma attached to the disease.

Elena Vuolo, a programme director at WHO, said leprosy cases are often misdiagnosed as leishmaniasis – a parasitic skin disease which is also endemic in Afghanistan – because early symptoms of both include skin lesions. By the time cases are properly identified, the patients have often developed “grade II disabilities”.

“The real problem is late diagnosis,” Dr Mural said. “People are scared of the disease, and families hide leprosy patients. When we find a patient with leprosy who does not have deformations, we don’t tell anyone it’s leprosy until it’s finished.”

The Scotsman first met Zahra and Fatima in October 2010, in a hospice run by a Scandanavian charity, in a walled compound with a small orchard at the foot of a spectacular red-rock gorge, near Yakawlang.

Zahra said she had been living there for 16 years and Fatima had been there for 12. The Taleban shot a male patient and burned part of the house when they were in power, but otherwise life in the hospice was lonely but peaceful. Dr Mural shook their hands and hugged them as we arrived and he encouraged me to follow suit. “It’s important to show people it’s OK,” he said.

The room filled with laughter. They joked about remarrying, and we drank tea together.

When I came back ten months later, even more tragedy had blighted their lives. They said Ahmad Babrak, one of their carers, had doused himself in petrol and set himself alight in the garden. Neither of them knew why.

And no-one, they said, had visited since we’d said goodbye last autumn.